Article #6: Over-Selectivity and Autism - What do Kids with Autism See?
Many students with autism lack the ability to discriminate visually. Thus, the "details" become the "whole." And, the more details there are to look at, the greater the number of opportunities to become distracted and off-task. If the "details" are of special interest to the student, he may perseverate on them. This will make it difficult for him to shift between one thought or activity to another.
For this reason, it's best to keep your classrooms "plain." Covering up or putting things away that are not being used is an excellent way to keep attention. The main items of focus in your classroom should be your visual cues - not fancy decorations or things that will grab the eyes away from where you want the focus to be! Autism classrooms, if they are sensory-friendly, look very different from traditional classrooms. Cute decorations, pictures, and designs may actually cause your students to be more distracted. Make sure, too, that your decorations are age-appropriate. Kids and teens with disabilities can experience feelings of embarrassment just like your typical students!
Remember too, that when your visual cues become "lost" in a sea of art, photos, and classroom decorations, the point of having them available for students with autism is lost. If you are concerned about the impact your decorations may have - take some data. Frequency counts or interval counts are a great way to see how often a student's eyes are drawn to a decoration in your classroom.
Article #5: Walking the Recess Border
Frequently, parents and teachers will express concern to me about their child or student with autism who "walks the border" at recess and never interacts with his/her peers, or his/her attempts to interact are futile and sometimes inappropriate. What advice can I give them to address such a situation? I think it's important to understand that some children may prefer to play alone. They may need to unwind and the pacing helps them to do so. But, in my work over the years, I think that the majority of kids who engage in these behaviors lack the skills to be able to play appropriately with their peers. For some, engaging in play with peers has been so difficult in the past that they have given up trying to learn.
Why is it important to address this problem? Parents and teachers must remember that while the child "walks the border," the other kids are building their relationships with peers. The moat between the child with autism and their typical peers begins to get wider. Simultaneously as the moat widens, it becomes even more difficult to close the gap.
What can we do? First, at school, be sensitive to the needs of the child. Realize that he/she may need some down time and providing this is perfectly acceptable. What's not acceptable is down time that lasts the entire recess period every day. Some ways to encourage participation are for staff to pre-plan recess activities for this student. Perhaps a peer can be enlisted in a "Circle of Friends" program to play a game that the student enjoys. For instance, if the child enjoys computers, he can choose a peer to play a computer game once a week. Consider that one-to-one play will probably be easier than group play. For the child who is reluctant to play with peers or stay engaged with peers, make the child's participation an opportunity to earn a preferred reinforcer. For instance, every five minutes he stays engaged in a game with a peer he earns five minutes of an activity of his choice later in the day. The reinforcer needs to be something that the child has chosen that is highly valuable to him/her. Remember! It's only reinforcing if it is reinforcing to the student! Or, consider imbedding the child's preferred reinforcer in the game itself. For instance, if the student enjoys astronomy, design a game using astronomy components; i.e., a game of freeze-tag with "planet" safety bases. Many times an activity can be tweeked in this way to gain the child's interest and participation.
Parents, the same principle is important to apply at home. Arrange play dates with children of his choice. Encourage the child to play for a prearranged time with the peer doing something that he enjoys, but then he must play something that the peer chooses as well. If he is appropriate, he can earn reinforcers after the peer leaves. Start by arranging play dates outside the home in popular kid haunts—places where kids are sure to have a good time and where they will be likely to respond positively to the invitation to play.
Summertime can be a difficult time for many families. A lack of structure and routine often results in the child's engagement in self-stimulatory behaviors or leisure time spent in repetitive, stereotypical activities. Creating a visual schedule with social activities built into the day is extremely important to avoid social regression. This allows the child to see that there is some time devoted to his/her favorite interest, but there are other times when he/she will be required to engage in other types of activities, both as a family and as a friend.
For many children on the spectrum, developing good social/play skills is difficult! Because developing play skills is work for these children, many tend to want to avoid these types of activities. It's important that parents not fall prey to this and be vigilant in teaching their children that engaging in social interactions are just as important as the other areas of his/her development.
Article #4: Autism, Motherhood, and Moving On
I sat on the bleachers on a scorching hot evening and watched my son with PDD accept his diploma. The printed program warned parents that it would be rude to "hoot and holler" and such behavior would detract from the seriousness of the event. But, I don't think the school officials truly understood how I would be feeling at this moment, or how any other mom in similar circumstances feels at times like these. Asking me not to "hoot and holler" was like asking me to refrain from celebrating one of his greatest achievements. I was thankful that a few parents were breaking the rules. I heard a few cheers, a few joyful yelps, as well as a couple of blasts from hidden horns. It was my daughter, who was seated next to me, who yelled out in support for her brother. She, too, knew what it meant to earn that diploma. Behind my sun glasses, the tears were flowing, but I managed to choke out a cheer. My memory was taking over now, and I found myself in a similar place over a decade ago.
It was the same type of hot, scorching day when the school bus pulled up in front of our street as the kids lined up to begin their first day of kindergarten. My son joined the line at the end, something that I frequently have observed over the years. Maybe being the last in line reduces sensory stimulation. Maybe it provides for him several opportunities to observe whatever it is he is supposed to do: getting a drink, buying his lunch, entering a classroom. He had a smile on his face, I do remember that. He stepped up high so that he could manage the stairs on the bus, holding onto the rail with his left hand. His blond hair was blowing gently in the breeze. I remember how he preferred to carry his backpack, rather than wear it the way it was intended. It looked heavy for him, even though it was empty. I turned the video-camera on and grabbed for my daughter's hand. She was watching intently, taking it all in and disappointed that she couldnst go too. She didn't realize that behind the lens, my tears were making it hard to see. As soon as the bus pulled away, I jumped in the car with her, and we took off. I just had to make sure that he was o.k. We followed the bus and parked discretely in the school lot. I saw him step down and take the hand of a friendly lady who was escorting the new students to their appropriate rooms. I felt reassured that everything would be fine. Kiersten asked for an ice-cream cone, and I was happy to oblige.
Later that evening, my husband and I sat down to review the video-tape I had made of his first day of school. We cued it up to the appropriate place and took our seats to relax. The volume worked perfectly: "Good bye! Goodbye!" all the moms were calling out to their kids. I could hear my own voice among the crowd. But, much to my horror, we discovered that I had done a wonderful job of filming the asphalt. I had completely missed capturing the whole experience!
In just a month, we will be dropping our son off at college. I am already overcome with anxiety about this new transition. We feel blessed that he is one of the lucky ones who will have the opportunity to experience this rite of passage. But, he still has PDD and the hurdles that this disability brings will need to be overcome, just as they were in his earlier years. This time, though, he will be on his own. He will be over five hours away from his home and from those who know him best. I imagine behind my sunglasses there will be tears again. I am also pretty sure that there will be tears most of the way home as well. I think that hooting and hollering will probably be at a minimum in our car. But, I know that as a mom, the greatest gift I can give him is his independence. He wants it; he is reaching for it. It will be my gift to him.
Article #3: What Causes Autism?
As a parent of a child on the autism spectrum, I frequently have asked myself this question. What parent hasn't? Mothers worry about all kinds of things they may have been exposed to during the pregnancy that might have brought on the disorder. They think about the sort of environmental assaults that their child may have been exposed to as well. At times, they may wonder whether or not genetics has played a minor or significant part in the diagnosis. For myself, I'm a data girl. "Show me the data!" has been my mantra as I have attempted to chart a course in the complex world of pervasive developmental disorder.
I had some concerns about my child's development, and almost immediately. While still in the hospital, he had difficulty learning to suck his bottle. He would frequently gag on the nipple. We had to experiment with different types until we found a shorter one that he could manage. Although he seemed to be a pleasant baby, he certainly had his moments when he could assert himself. He didn't like being carried into our family room. Almost immediately, he would begin to cry when we entered the room. He slept soundly two hours in the morning and two hours in the afternoon, and then went to bed at 7:30 p.m. We were lucky, I guess. But still, even the excessive sleeping worried me. When he was awake, he showed very little range of emotion. He rarely made any baby noises. He didn't appear to be interested in faces, toys (unless they had moving parts), or baby games such as Patty Cake, or Peek-a-Boo. He was not concerned when I left the room, as most babies are when they can't find Mom.
Faithfully I brought up my concerns to the pediatrician at each visit. He would always spend time reassuring me that everything was fine. My son was meeting benchmarks for height and weight, appeared healthy, and was a very handsome baby. He was delayed in talking (among his first words were "light," "fan," and "water meter"), but not terribly delayed. He also appeared to lack torso strength. But, he only missed the benchmark for sitting and crawling by one or two months. Not enough to even rouse concern with the "powers that be."
I had a difficult pregnancy with my son. "We" had a total of four ultrasounds, one x-ray, and two doses of morphine for a kidney stone. I have always wondered about those assaults to my body and his, especially the ultrasounds. In this day and age, we are really fussed up about the vaccinations and the mercury toxins. But, really, it could be almost anything environmentally that we need to rule out: chloride in the water, plastic baby bottle liners, disposable diapers, processed baby food and formula, and ultrasounds. My son also had a horrible reaction to his first vaccination: we spent the morning in the ER because of his high-pitched screaming and fever. But then, again, he was already exhibiting some signs of autism even before the vaccination. It may be that the chicken did come before the egg in his situation. But do I know for sure? We know that more boys than girls have autism. In my own family, my sister's child also has PDD. We are fairly certain that there are some other members of our family who have autistic traits but who have been diagnosed as ADHD. My husband's family is full of "loners." For my son, it may be that the autism genetics of both sides of his family stepped in. But why didn't this disorder also kidnap my daughter?
We do not know what causes autism at this point in time, but rest assuredly, some day we will. We need to be good advocates for research and not jump on every band wagon that claims a possible cause when it's not supported by intensive, data-driven studies. Without the research, we NEVER will know what causes autism. The longer we wait, the more children will be afflicted. When we look at video tapes of infants who were later diagnosed with autism, many of the signs are there. It's just that the physicians and parents didn't always recognize them at the time. As parents, we must educate even those we assume are educated. I am continually surprised by the number of people who still think you can "catch" autism and that it can be "cured" with a pill. Until parents are educated and can form a solid front with our Department of Health and demand that research money be allotted for autism, and in dollar amounts that will indeed make a difference, we will always be left with the sympathetic crumbs that are thrown to us by legislators who are lukewarm to the subject. After all, most of them aren't living it like we are. Sadly, though, if the autism rate keeps climbing as it has been, they or somebody they love eventually will.
Many parents would welcome your input if you felt that their child is not developing according to developmental tables and may need assistance. Professionals should be aware that parents might not notice that their child is not developing on schedule. This may be particularly true if the child is their first born. Often times, however, the parent may suspect there might be a problem. They may have been discouraged by friends, relatives, and even their pediatricians from proceeding further with an evaluation. Insurance, too, may have refused to pay for such an evaluation creating even more frustration.
When talking to the parent about the child's problems, begin by complimenting the parents on particular aspects of their parenting style and commenting on the child's strengths. The parents should feel at ease with you and that they are not to blame for the child's problem. Be sure that you express to them the things that endear you to their child. They need to know that you really do care about their son or daughter.
When speaking about the child's delays, be as objective as possible. Show concrete examples of the things that concern you (test scores, classroom projects, behaviors). Showing the parent the anonymous work of other students of average ability level at his/her age level will help to explain the things that concern you.
If the parent expresses any worries of his/her own, be sure to validate them. Do not make light of his/her concerns. If you are to build a trusting relationship, you will need to be someone with whom a parent can confide in.
Do not say the child is doing fine when he/she is not. If the child has had a bad day, say so. Many professionals think that not telling the parent when a child exhibits a troubling behavior or has had an "off day" is for the best, especially if the behavior was under control. However, this promotes distrust. Parents will always hear about the child's behavior through other parents and through other children. If the child is having a good day, tell the parent that too! It helps to reduce the parent's anxiety level when he/she is being told some good news now and then.
If you think the child may have a particular condition, provide evidence of that for the parent. Ask the parent, "Did you ever wonder why your child does (that behavior)?" or "Did you ever notice that your child (does this) when he/she is upset?" Give them a brochure or a book to read about the condition you suspect. If the evaluation proves you to be correct, it will help the parent be somewhat prepared to ask appropriate questions of the doctor instead of "being blown out of the water" at the time of diagnosis. You are not diagnosing the child; and there is nothing wrong with providing guidance to a parent.
Follow up with the parent after the evaluation and offer to point him/her in the direction of organizations that may help provide support to the family.
Find another parent to talk with the family. Talking to another family who is going through a similar situation can be of enormous help to parents.
Article #1: Butterflies
Every mom wonders what it will be like the day their child leaves for college. That day represents the start of a whole new life for both their child and for themselves. I was no different, but the circumstances sure were! I was saying goodbye to my son with an autism spectrum disorder at a campus five and a half hours from our home. For eighteen years I had done my best to be his compass. And now, I knew that he would be navigating his own waters, and I had to watch from a distant shore somewhere very far away. I felt a growing feeling of helplessness rising up in my very soul in the weeks preceding the end of that summer. There was just no way to truly prepare for this day.
We dropped our son off at college in August. I think it was the hardest thing that I ever had to do. As we waited for his prearranged time to move into the dorm, we decided to visit some of the buildings on campus and get 'the lay of the land.' We walked for three hours all around campus, finding his classrooms, the dining halls, his mailbox, the laundry room, etc.-- all those places he would need to frequent as a student in his new home away from home. I felt comforted seeing his excitement and the sparkle in his eyes! He was closely examining all the student projects displayed in the engineering buildings, and he told me that he couldn't wait to get started. Throughout our son's earlier school years, he was always a kid who embraced learning. Long after his homework was finished, he would spend many hours delving into his own research about subjects that intrigued him. It began to dawn on me that he really did belong here. He could be a part of this community, and I knew that he could contribute to it too.
Fall season sounds and smells were in the air, and it was a beautiful day. As butterflies flitted among the remaining summer flowers, I remembered the saying that when one sees a butterfly, it is the soul of someone dear to you who has found his/her way to you to provide support and solace. There were so many butterflies, and I smiled to myself, comforted by the thought. I reflected that there were indeed many "butterflies" in our son's life... people who supported and cheered for him. There were butterflies in his parents' lives too... people who buoyed us up when we needed it over the years on days like today.
My son was so anxious to begin his new life. He was full of hope and the dream of a fresh start and all those wonderful things that youth brings to a young one on his/her first day of college. I was proud, worried, sad, and hopeful too . . . all rolled up into one ball of emotion. He didn't know that the night before, I had cried myself to sleep, but only managed to drift off as dawn approached. A mom's private worries are sometimes like a cavern, and they run deep and far.
At last, it was time to say goodbye. We had arranged his room just the way he wanted it. I knew that he had everything he needed: from can opener to laundry detergent, it was all there. Now there was nothing more for me to do, except of course, to pray. It was late afternoon, and we had a long journey back home. It came time for that final hug. I grabbed him with all the strength I could muster, and I noticed that he hugged me pretty darn hard too. He avoided my eyes, as he sometimes does when he is hiding his emotions. But, I couldn't hide mine. Tears were flowing as I told him to always remember his roots and that we were always there for him, despite the distance. I reminded him that he belonged here: he had earned it, and everyone believed he could do it. He knew that I was struggling with myself to let go. Instinctively, he tried to make it easy for me and managed a smile.
"Don't worry, Mom. I'll be o.k.," he said.
I watched him as he walked back to his dorm. There was a butterfly flitting around his shoe, a small white one so persistent and playful. I doubted that he noticed, but that little winged creature meant all the world to me at that moment. It was still there as my husband and I piled into the car with heavy hearts and pulled away.